Q&A: AKF president discusses COVID-19 emergency fund in light of recent corporate support
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On March 20, the American Kidney Fund launched a COVID-19 emergency fund to provide financial assistance to low-income patients on dialysis or who have undergone kidney transplantation (read more about this here). The funding was quickly exhausted due to the large number of applications the organization received. After “appealing to corporations, foundations and individual donors to replenish the fund,” the AKF recently reported it has received donations from three corporations.
"We are so grateful to Akebia, Horizon and Natera for stepping up to help patients during this emergency, and we are hopeful that many other corporations will join them in helping to fund this critical effort,” LaVarne A. Burton, president and CEO of the AKF, said in a press release. “These patients are vulnerable and highly susceptible to serious illness if they come in contact with the coronavirus. Too often, their already fragile finances cannot absorb another shock such as what they are experiencing. Our Coronavirus Emergency Fund is a lifeline for them.”
To shed more light on the emergency fund, Healio Nephrology spoke with Burton about AKF’s past related efforts, the current state of the fund and what potential next steps may look like. – by Melissa J. Webb
Question: How did the idea of the emergency fund come about? Has AKF done something like this before or was it modeled after another organization’s past efforts?
Answer: The Coronavirus Emergency Fund is modeled after our many years of providing emergency disaster relief assistance to kidney patients. We have a longstanding Disaster Relief Program, which is the only rapid-response financial assistance program specifically for dialysis patients who are affected by natural disasters. Our largest disaster relief effort was in 2017, when we provided $850,000 to more than 3,800 dialysis patients affected by hurricanes Harvey, Irma and Maria, but we have been operating this program for many years.
As the coronavirus spread around the country, we quickly realized that we would need to mobilize resources to provide emergency assistance to patients not in a defined geographic area, as with natural disasters, but in the entire country. In natural disasters, the flow of grant requests tends to spread over time when, for example, patients evacuate to safe locations, or when they return to their homes and need to restock all their food. This crisis is different, because it is affecting the entire nation at the same time as states and municipalities put in place varying levels of restrictions and closure of nonessential businesses. Dialysis and recent transplant patients are navigating loss of income (their own or a family member’s), shortages of food and supplies, and a combination of being forced to stay at home and needing to travel for essential treatments and appointments. AKF has always been there to help patients in times of crisis, and we are determined to help patients through this crisis as well.
Q: What have you learned in surveying those applying for aid? Can you elaborate on some of the challenges and fears patients face?
A: The patients we help are at high risk for serious illness if they come in contact with the coronavirus that causes COVID-19. Naturally they are fearful, understanding their unique vulnerability since most cannot shelter in place — they must go to clinics for their life-sustaining dialysis treatments. The dialysis and transplant patients whose family members work in essential jobs that cannot be done remotely worry about being exposed to the virus that way. For many, the isolation causes emotional distress.
The patients applying for grants report difficulties finding kidney-friendly foods, and many have to rely on others, or delivery services, for shopping. Two-thirds of our grant applicants say they need money for food, with another 2% reporting they need funds to purchase nutritional supplements.
Transportation is an issue for many patients. In urban areas, many patients who previously used public transportation to get to their treatments now need to use private transportation to minimize potential exposure to the virus. More than 20% of our grant applicants need the funds for transportation.
The remaining patients are using their grants to pay for medication copays and medical supplies. Patients, especially those who dialyze at home, are reporting shortages of hand sanitizer, paper towels, masks and other supplies that are needed to keep their homes sanitary.
Q: Can an individual apply multiple times for a grant?
A: Right now, our program provides only one grant per applicant. We seeded the AKF Coronavirus Emergency Fund with $300,000 which was reallocated from other parts of our budget. That was exhausted on the first day we accepted applications. Our goal is to be able to provide an emergency grant to every patient who applies and qualifies, but that will depend on our ability to raise enough funds to meet the demand. As of this morning, we have 4,500 applications but funding for only less than 2,000.
Q: Have you been in contact with health care providers (dialysis centers, for instance) to try to ease the burden of travel (or other concerns patients have with getting the health care they need)?
A: The information we received from providers as this health crisis took hold helped to inform our decision to establish the AKF Coronavirus Emergency Fund in the first place. Social workers, especially, told us about specific patients and the difficulties they were having, and it was clear that we needed a disaster relief program that would be national in scale.
We know that centers are working overtime protect their patients’ health and ensure that they can receive treatment without interruption. And we are sharing everything that we are learning from patients. More information helps all of us make better decisions.
Q: Do you expect other companies or organizations (besides Akebia Therapeutics, Horizon Therapeutics plc and Natera) will make contributions in the future? How did their support arise?
A: Our experience in the past with our Disaster Relief Program has been that corporations and foundations have been willing to step up to help these vulnerable patients. We are so grateful to Akebia, Horizon and Natera for coming forward with support, and we expect many more companies that care about dialysis and transplant patients to come forward. We are actively reaching out to all our corporate and association partners and applying to foundations for additional funding, and more organizations will be coming forward with funding in the coming days and weeks.
Right now, the delta between applications received and funding in place is about $800,000. It’s clear there is great need among low-income dialysis and transplant patients as we are hopeful that generous support from our partners will help us close the gap. AKF is positioned to provide emergency assistance rapidly to patients once we have the funding available.
Q: What will the next steps be?
A: We are currently processing applications in the order they come in and creating a waiting list of patients who qualify for our emergency grants. We are also helping solve problems whenever we can. Our patient services staff are on the phone with patients and social workers all day, every day.
Just recently we heard about a dialysis patient who was desperate because she could not find diapers, wipes and other supplies for her infant because all her local stores were out. That same day, several of our employees bought supplies with their own money and shipped them to her. While that’s a little out of the ordinary, it’s just one example of how our team is going above and beyond during this trying time.
Q: Anything else you feel would be important for our readers to know about the emergency fund?
A: It’s important to know that 100% of all donations to the AKF Coronavirus Emergency Fund will go directly to patients, and we are on Charity Navigator’s list of highly rated charities that are providing support. We are also appealing to individuals to help us meet the enormous need. Anyone who wishes to donate may do so at KidneyFund.org/emergency.
Disclosures: Burton reports no relevant financial disclosures.
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